Large study aims to predict brain bleeds in rare HHT disorder

NCT ID NCT01158807

Completed Knowledge-focused Sponsor: Unity Health Toronto Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at over 2,200 people with hereditary hemorrhagic telangiectasia (HHT), a rare condition that causes abnormal blood vessels. The goal was to find out what makes some people with HHT more likely to have a brain bleed. Researchers collected health information, blood samples, and genetic data to better understand these risks and improve future care.

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Conditions

The condition(s) this trial relates to.

arteriovenous malformations of the brain hereditary hemorrhagic telangiectasia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

HEREDITARY HEMORRHAGIC TELANGIECTASIA

Contacts and locations

Locations

Barrow Neurological Institute

Phoenix, Arizona, 85013, United States
Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229, United States
David Geffen School of Medicine at University of California, Los Angeles

Los Angeles, California, 90095, United States
Georgia Regents University

Augusta, Georgia, 30912-3135, United States
HHT Foundation International, Inc.

Monkton, Maryland, 21111, United States
Hospital for Sick Children

Toronto, Ontario, M5G 1X8, Canada
Johns Hopkins University School of Medicine

Baltimore, Maryland, 21287, United States
Mayo Clinic

Rochester, Minnesota, 55905, United States
St. Antonius Hospital

Nieuwegein, 3435, Netherlands
St. Michael's Hospital

Toronto, Ontario, M5B 1W8, Canada
St. Paul's Hospital, University of British Columbia

Vancouver, British Columbia, V6Z 1Y6, Canada
UCHealth Pulmonary Vascular Disease Clinic - Anschutz Medical

Aurora, Colorado, 80045, United States
University of Alberta

Edmonton, Alberta, T6G 2B7, Canada
University of Arkansas for Medical Sciences

Little Rock, Arkansas, 72205, United States
University of California, San Francisco

San Francisco, California, 94110, United States
University of North Carolina at Chapel Hill

Chapel Hill, NC, North Carolina, 27599, United States
University of Utah

Salt Lake City, Utah, 84132, United States
Washington University School of Medicine

St Louis, Missouri, 63110, United States
Yale University

New Haven, Connecticut, 06520-8042, United States

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